Written from the heart, this is the unadulterated truth of life with multiple chronic illnesses and being housebound. My life open for you to follow. Please join me

Main menu

Post navigation

Holding on?

It doesn’t happen often, but there are days when I find myself asking questions, probably the same questions I know others ask of me, but when they come from inside, they mean more. Don’t take that badly, I’m not putting anyone out there down, but we all know, that those silent questions are always the most powerful ones.

There isn’t a certain time of day, or a feeling, place or set of circumstances that triggers them, they just appear when I least expect them and without any warning. Bang, there it is, one of those damned questions. Todays appeared when I was taking my lunch out of the fridge, Vegetarian Mousaka, I wish I had eaten the packaging as it looked far better than the contains did, and probably tasted better too. I was searching for the use by date, then that question appeared.
“What is it that keeps me going?”.
The first answer was easy.
“Definitely not the food”
Then I started to really think about it, to answer what had appeared from somewhere back there in the muddle I call my brain.

I’ve been here in this flat now for 9 years, a length of time that if you are honest, I bet you can’t even imagine spending in your home. Never going out, not even to get the air. Your world is the space you call home and there is nothing else outside of it, that you can get to. 9 years, it’s a long time. Yet looking back, I find it almost impossible to believe that it could possibly be that long since I last opened my front door, and walked out into the street. Of course, I have been out, I’ve written about that many times, those trips to the hospital, but even then, I don’t make it on my feet, I’m strapped in a chair and guarded by ambulance attendants. Those trips feel far more like being transferred from one prison to another, just to be brought right back again. But my home isn’t a prison, it’s never felt that way, my prison is my body, not the place where it lives. I guess that’s the first answer, I love my home, I love what I see daily, how it makes me feel and the feeling of safety and security that it gives me. I doubt there are many prisoners who would describe their jail that way.

I guess, I don’t really even see my body as a jail either, how can I, it’s the same one that I have lived within since the day I was born. In that regard, I’m as free as you and everyone else out there. Within my world, there is one other constant, my husband. Just like my body, he has been here throughout this phase of my life. There are two clues wrapped up in the last sentence. My husband, who to anyone who reads my blog will know that without him, I would be isolated and totally alone. Yes, there are others now, my nurses and carers, but they are new to this madness. Adam, is my one constant, the one love that lifts me through all the bad spells and makes me laugh and smile on even my worst days. No, I wouldn’t want to survive without him, but that’s a totally different question.

All our lives are broken into phases, not just childhood, teens and adulthood, as they have many, many phases mixed up within them. Some of them cross over each other, and some are totally isolated by the power they have over us. They are made up of relationships, jobs, hobbies, likes, and dislikes. Take my health, they say it started back when I was 21, but they didn’t diagnose it until I was 40, just two years after marrying Adam. During this phase I have been married, had children, got divorced, had three totally separate careers and married again, following three failed relationships. Phases, that intertwined, yet some remained separate in many ways. As we move through those phases, we grow, become more mature and have a deeper understanding of life. All of it makes us the people we are, so for me to give you, or even myself, one defined answer as to how I survive, would be impossible, but I do have many clues.

I survive because I haven’t changed, it’s my life that has changed and it did it so slowly, I grew used to where I was and the fact that I couldn’t be anywhere else. From diagnosis on, I went into a nine-year long nest building phase. I spent all my spare money and time, making our home as beautiful and as comfortable as I could. My working phase of my life overlapped the first three years of being housebound. I had time to adapt, time to adjust and I didn’t even know I was doing it. Two phases ended, but I still had the constant of Adam, the anchor that held me steady while I built the phase I’m in now. Content, housebound, writing and happy. I got here, without even knowing it. I survive because I am here and I now can’t think of a single place that I would rather be. I know that might sound odd to you, but to me, there is a logic there, as if I didn’t feel this way, I would go mad, I’d fall into depression and I would probably end it all. I survive because I have all the things that it takes to make a human happy, right here where I am. To the modern mind I know that’s hard to grasp, but to our ancestors, it would have been easy. Think back to a time when people were born in the village where several generations of their family were also born and spent their entire lives. Not once leaving for any reason, because they couldn’t see anything out there worth leaving for. They didn’t leave because they were happy just where they were, just as I’m happy just where I am.

I have become so content in the space that I live, that I can’t even tell you when I last even looked out of the window. There is nothing out there that I long to see or want to be part of any longer, why would I, as I have everything I need right here. Unlike my ancestors, I have the benefits of the modern world, which actually make it easier to live an isolated life. Entertainment is at my fingertips, the world is there too and when my health is up to it, I can join it and chat to whoever is there. I don’t need physical people here in front of me, to have company when I need it, I just open my PC and there you all are. What keeps me going is all of this, plus a lot of magic from the medical world. There is one other thing that I haven’t mentioned, and that’s a zest for life. No, it doesn’t die just because we are doing so. As my body fails me, it tells me there is still much to do and how can you give up, when you haven’t finished doing all those things still to come. I keep going, because I want to see what tomorrow will bring, good or bad, I haven’t seen it yet and I want to, and as long as I or you have that need, we will all keep going, where ever we are.

Funny, I was thinking on similar lines this morning. It has not been 9 years of being housebound, only about 18 months, but I am content with my place in life for the very first time. It has been such a blessing to find your blog and to know there are others out there facing similar struggles. Thank you for sharing your story.

Once you accept that your housebound, there is a strange growing contentment. It is as though all the hassles in life slowly fall away and life becomes peaceful. Those who are still part of the hustle and bustle of life, just don’t get it, as they believe they need all that baggage, which we don’t. Yes, having an income would be nice, but I guess we can’t have everything 🙂

You write so beautifully and always seem to touch on what I’m feeling, thinking. Thank you.
I find I have to push myself to keep my house clean and peaceful, as that is what keeps me content and happy here.

I’m on 2 new medications. For horrible vertigo and such awful cramping in my calves to the point of my feet pulling up and really deformed. All I really want to do is sit and read or just sleep. I know it will take time for me to adjust. When I am back to myself, I don’t want to be left with such a huge mess.. Ugh….I can’t even imagine what that would do to me!
All of us have to get used to our new normal. You do this so well. And have the most loving man to help you through.
((Hugs to you both))

No matter how much support we have, adjusting to the new normal is still hard. Like you, I used to have a wonderfully tidy and clean home. Adam isn’t houseproud and doesn’t seem to be able to keep up with even half of what I see that needs doing, but I have even managed to adjust to his normal. We all have to adjust and adjust again, you will get there, I promise you.

I hope the new drugs start to work for you. Spasms are no fun, and it’s a subject I know all too well. I wish that I could give you a magic pill to take them away, or failing that a trick that works. Well there is one and it’s back to my old pal relaxation. No, I know you can’t relax the actual spasm away, but if you can relax the rest of you, it will help.

When my spinal cord injury happened it was a total, overnight change for me, my husband, and our sons who were then in their teens. I went from having a great job and being very active to being bedridden/wheelchair-bound. I can remember thinking I’d never get used to this new life and spent many nights crying quietly; mourning my lost life.
But over the past 16 years I’ve pushed myself to move from wheelchair to walker to cane. And now, if I’m feeling brave, I don’t even use the cane in the house. Of course I’ve had service dogs to help me.
While I realize that you aren’t going to be able to improve (different conditions altogether) I applaud you for your acceptance of your new life. Our homes may be where we spend almost all our time but that can be a good thing.

I don’t know if I would have dealt any better than you, if I had been suddenly housebound. I always knew it was a possibility that lay ahead of me, so I suppose the adapting started from day one. Yet it still did come as shock to the system the day it happened.

I think we can all be happy when housebound, how ever we get here. We do have to grieve, as we have lost what we knew, but once done, life went on. Too many live in fear of the day, but there really is no need to. However we get here, like most things in life, it’s our attitude that matters. Yours was clearly to get the use of your legs back, mine is to keep learning and keep writing, as I see a purpose in both. You and I share that, no matter how we got here, we had and have a purpose. 🙂